Sunday, 1 June 2014

It has been a long time

It has been a long time since I posted on here but I have been very busy with moving house and my main role at the BDS is being the Ledderhose expert, I have still been doing some work on my blog and have had some interest from the company that manufactures the radiotherapy machines (used to treat both DD and LD) and I am hoping that this will to some good exposure on the condition. It is really a case of wait and see though I know they were hoping to get their website updated in the next month and then they had a few other things they wanted to work on with me which all sounded good.

I have also had a lot of patients contacting me, due to the frequency of Ledderhose my blog is not restricted to patients in the UK but rather worldwide and as such I am often contacted by patients from the USA and other countries but it is usually the USA or the UK.

Anna and I are also hopefully going on a few training days soon that should help us with various aspects of the charity work.

Work has also begun on the Dupytren's Symposium which is taking place next year (organised by Wolfgang at the IDS). Hopefully I will be able to attend and maybe even give a patients perspective to the numerous doctors and researches that will be attending.

I think that one of the key things with these conditions is that as time passes we continue to improve knowledge through our interactions with more and more patients and whilst this may not mean we have any new treatments it does mean that we have a better understanding of the success that each treatment is having from the patients point of view.

Thanks everyone for helping with this and remember that there is a personal stories section on the website and if you have time to write yours up to add to it that would be great.

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